Being Hopeful

I have been making some great progress over the past two months. Unfortunately, I have seen no improvement in my GI symptoms, but I’m going to focus on the positive improvements in this post.

Sitting upright has been a possibility for me lately. When I say possibility, I mean that it still increases my vertigo, headache, and neck pain, but it pains me significantly less than before. After a really good PT session, I find myself giddy with excitement and planning what I will do when I am able to sit up for longer periods and hopefully regain the ability to walk. 

I envision myself dancing to music at the beach and watching a magnificent sunrise or sunset with family and friends. Or maybe I’ll go to a park, read under a giant oak tree, have a picnic, or dare I say even travel abroad (like my dream trip to Southern France). There are so many things I want to do and experience, but to some degree, I’ve learned not to get my hopes up or have high expectations.

As you know pretty well by now, my health these past three years has been a rollercoaster. Gratefully, I’m innately optimistic and relatively speaking have a pretty positive demeanor, but sometimes this characteristic harms rather than helps me. More times than I can count, I get so excited when I see any sign of improvement and immediately become hopeful I may be able to attend a particular event or outing. I plan it all out in my head down to every detail and imagine what it will feel like to be out of this bedroom. 

But more times than I can count, right after a few weeks of improvement, my health nose-dives, and my hopes, plans, and dreams are crushed right before my eyes. The trips, experiences, and memories I envisioned rarely come to fruition. My family has scheduled and then canceled about 10 vacations in the last three years. I watch everyone continue living and experiencing what I lay in bed dreaming about, while I remain trapped. I don’t feel bitterness toward the people that are living out what I hoped to experience; I am truly happy for them. But that doesn’t mean it isn’t hard when this happens.

One of my biggest heartbreaks was going to Mayo Clinic. So many people kept telling me that they just knew I’d get answers there and that it was what cure their friend or relative. After spending most of my time in the hospital the months prior, I was clinging to the idea that Mayo would bring answers to keep me hopeful. I don’t think I’ve ever cried harder than I did when I realized that Mayo couldn’t help me. After all, they’re the #1 hospital in the nation. The lack of answers I received at Mayo broke my spirit. It seemed the doctors there viewed me as overreacting or a lost cause, a child not worth helping. I cried through every single one of my days in Rochester arriving at each appointment with puffy eyes often soaking my face mask with my tears. It shattered my high expectations.  After this trip, I had to pick myself up piece by piece and rebuild my spirit. In this case, was it worth it to get my hopes up so high?

So what has this taught me? Should I lean into optimism and have high expectations just to have them crushed, or should I try not to dream for better? Perhaps the answer to this question is unique to each person. Given my nature is hopeful, setting more realistic goals and not expecting much has been key. On the other hand, I must grab onto hope in order to get through this war with my physical health and come out on the other side with my mental health intact. Right now, keeping those two mindsets in check is key.

Being optimistic and realistic simultaneously is a fine balance… one I am still learning to juggle.